New hope for cluster headache sufferers

Patients who suffer from severe cluster headaches are being offered new hope thanks to a revolutionary treatment at the National Hospital for Neurology and Neurosurgery (NHNN).

A pain-free Barrie Wilson at his home DIY workshop

The pain of cluster headaches (CH) is notoriously excruciating and usually described as one of the most distressing conditions known to mankind. Female patients describe attacks as worse than childbirth and patients are occasionally driven to suicide. Attacks last between 15 minutes and three hours and can occur up to eight times a day.

For a small group of CH patients there has been no solution. Until now.

The treatment, known as deep brain stimulation, is already used to treat other neurological conditions such as Parkinson’s disease and dystonia. In CH patients, it is used to target a part of the brain (the posterior hypothalamus) which is overactive during the headaches. An electrode is inserted into the brain and linked to a stimulator under the chest. When the stimulator is switched on, an electric current passes into the brain, blocking the damaging signals that cause cluster headaches.

Barrie Wilson, 67, of Newton Abbott, Devon, is only the fifth patient to have the procedure at the NHNN. The device was implanted last August and switched on in October and he has had only one headache since. He had been suffering from cluster headaches for 14 years without ever discovering the trigger.

Ludvic Zrinzo (right) during a DBS procedure

“I started getting these horrendous headaches in 1996. I don’t know why it happened. I went to see my GP who was really good about referring me to a neurologist and I was diagnosed with chronic cluster headaches straight away,” he said.

“Over the years I tried the pharmacy's arsenal of medication. A few things worked for a time, but none of the solutions I was offered would have worked for ever. The fear was that as the body gets used to the medication, it stops working. My quality of life suffered because I could not do anything spontaneously and would have to take oxygen with me even if I wanted to go for a little walk in the park.

“Meanwhile the highs get high and the lows get very low and there was a time when I was on anti-depressants to keep me calm. Then I met Manjit (Matharu, his consultant at the NHNN) and he offered me deep brain stimulation. I had nothing to lose and everything to gain so I took the opportunity. And only last week I went to the park and didn’t even give it a second thought,” said a smiling Barrie.

This new method of treating cluster headaches follows on from pioneering research at Queen Square, where the NHNN and the nearby Institute of Neurology at UCL are housed.

The research, which goes back a decade, pinpointed a particular region of the brain (the posterior hypothalamus) and studies revealed the presence of increased blood flow in this region during a cluster headache attack, a sure sign of increased activity.

Early pilot results of DBS in a small number of patients with unremitting chronic cluster headaches were very encouraging and this led two consultants, neurologist Manjit Matharu and neurosurgeon Ludvic Zrinzo to introduce the procedure at the NHNN.

Mr Matharu and Mr Zrinzo said: “We are really excited about the early indications from using DBS in this way. Patients who suffer from this excruciating condition come to us at their wits’ end and for many of them we are a last resort. Unless you have experienced cluster headaches you cannot underestimate the impact they have on the lives of sufferers and their families. If we can help them in any way it’s immensely rewarding,” they said.

Mr Zrinzo added: “DBS has been used for several decades in the treatment of movement disorders such as tremor, Parkinson’s disease and dystonia. Now, promising results in early studies of DBS for certain types of severe headache have led to the introduction of this new procedure. We hope that our encouraging early experience will help to establish a clinical trial that rigorously explores the utility of DBS in cluster headache. Patients who undergo DBS often agree to participate in research and this provides a unique opportunity to explore the workings of the human brain and the diseases that afflict it.”

The National Institute for Health and Clinical Excellence (NICE) is currently developing guidance for the NHS on deep brain stimulation for severe cluster headaches, which looks at the safety and efficacy of this new procedure. The draft recommendations are currently out for a public consultation. Click here to submit your comments on the procedure.

Contact details

Out of hoursThe normal working hours for the Communications Unit are Monday to Friday 9am – 5pm. The only media enquiries that will be answered outside of these working hours are urgent enquiries and those relating to major incidents. To access the out-of-hours service call switchboard on 0845 155 5000.